Ok well, I guess I’m right back at it. That was quick! But I have some cool news to share! …and it revolves around all the awesomeness that there is left to be had in my life! So please watch my latest video Blog and subscribe if you want to be alerted when I post something new.

Thanks for watching!

…and take the time to watch, hear and listen to this message below as well.

Why??? Because…

It’s Good To Be Alive Today

Big Love for DIFTL!

With all my years working for Apple it looks like my creative juices are finally flowing again. Enough anyway that I’m trying to pick back up what I learned about rudimentary video editing again a little bit. So I tried some old & new tricks to make the vlog a little slicker. But other than a few splices here and there my audio was unscripted and one take, so forgive me forgetting how to use the English language in quite a few places. lol

This whole process is so freaking frustrating and confusing and I’m just so sick of politicians from all sides of the aisle telling patients with little hope of survival what promising treatments they can pursue. In my case, I would like to try a Stem Cell treatment currently under Phase 3 Clinical trials here in the US. The current trial, if you’re accepted into it, gives patients a 50% chance of getting the treatment or 50% chance of getting Placebo. Well… I don’t have time to wait on the FDA, and I don’t have time to waste on the chance of getting a sugar pill. Sorry, I’ve already gone through one ALS drug clinical trial which the FDA finally did not approve after being on it for an entire year. All that time not knowing if I was on it or getting a placebo. I want the choice to get this procedure done now, safely… in this country. Not South America, not Asia, not the Middle East. We need Mass General, Mayo Clinic…. the best medical institutions in the world. Sadly, I think even if this bill passes today, we are still a long ways away.

I want my “RIGHT TO TRY”
End Rant…

Right To Try allows terminally ill Americans to try medicines that have passed Phase 1 of the FDA approval process and remain in clinical trials but are not yet on pharmacy shelves. Right To Try expands access to potentially life-saving treatments years before patients would normally be able to access them.

Advocates for Americans facing terminal and life-threatening illnesses, wrote to urge our support for the Trickett Wendler, Frank Mongiello, Jordan McLinn & Matthew Bellina Right to Try Act of 2018. This bill will help protect the right of sick Americans to try to save their own lives. Fewer than 3 percent of cancer patients can participate in clinical trials, and for less common diseases like ALS and deadly Duchenne muscular dystrophy, the numbers are even lower. Right to Try gives people who cannot participate in trials a new path to access promising treatments.

Another great night out to see some live music with good friends., and a great surprise appearance by my step-sister Julie! So awesome that she came out to hang with us. JJ Grey & Mofro were looking sharp, as the whole band was dressed in fine suits. That a bit kinda weird as I didn’t think that was JJ’s style, but they looked and sounded fantastic. One of the many musical highlights for me was their take on a cover of “Hey Jude.”

Each time I go out now I feel like it’s just a little bit harder than the last time as the ALS progresses. My arms are losing strength and it’s hard not to give people a nice full hug, but I’m not going to let it stop me from enjoying every minute. It’s certainly not affecting my smile! Can’t wait for the next show.

Once I finally set out to publish this blog, I thought long and hard about what I wanted to accomplish by opening myself up in this format. These were basically my goals…

Communicate to friends and family, stay connected

Help others embrace the brighter side of their troubles. Show that it’s ok to be vulnerable

Document my journey, and having my writings about my experiences on record

Revisit special memories…. share some cool stories

Celebrate life. There’s a whole lot of awesomeness to be had

Share, discuss and celebrate live music! (because that’s my jam)

So I will continue to use this space to share my unfiltered experiences and thoughts. And not just the sad stuff, but all the great stuff. I’m grateful that you have taken any time to read my ramblings or look at my photos or check out whatever music I share..

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This coming Saturday night I’ll be heading over the the Capitol Theatre to see one of the most soulful artists I know. One of the coolest dudes I’ve ever met. If you’re going the Cap on Saturday to see JJ Grey, stop over to say hey! I’ll be parked in my normal spot in the ADA section. Soaking up some music for my soul!

I haven’t written anything here in the last week or so, but I have been doing a lot of thinking and reflecting. A dangerous yet interesting and adventurous place for me to be… in my own head. As each day passes, I’ll notice a little something about myself physically here and there that was a bit different from the previous day. It really is quite mysterious and frightening all at once. Lately it’s the use of my left arm strength and dexterity of my fingers. My brain is sending the signals loud and clear to my hand… “Yo arm… reach across the table and grab that water bottle over there!” well it’s really quite frustrating because my arm’s just like, “What was that brain my friend? I’m not picking up the signal you’re trying to relay over here.” Communication breakdown! (queue Jimmy Page guitar riff). I digress… but this what I’ve had on my mind to opine about today. This mind, body connection.

I’m kinda blown away with this concept. This connection between the brain and the body happens on both physical and chemical levels. One never thinks about it…. it’s automatic, it’s instantaneous. I’m certainly not going to bore you with my findings from articles, medical journals and the consultations of amazing spiritual healers. But here it is in a nut shell, there are these little guys called “motor neurons,” or nerve cells that send electrical output signals from the brain to your muscles. And these little guys are needed for your muscles to actually work and function. So yeah, they’re important little guys. We all have em, honestly I never gave them enough credit for the hard work they do. They wield a heck of a lot of power. Those of us with ALS know all to well the frustration of having a brain that remembers how to move correctly, but a body that simply doesn’t. For us, when these motor neurons lose their strength and die, they don’t replenish. Once they’re gone… they’re gone, gone… and nothin’s gonna bring them back. They’re gone.

Yeah so for me this process started almost 5 years ago with my left leg, eventually making it’s way around to the right one. Nobody knows why. Nobody knows how. Heck a bunch of pretty good neurologists couldn’t diagnose it for almost 2 years. Crazy…. I know. Doesn’t seem to make much sense. Completely healthy one day, minding my own business and my left foot starts getting weak. And so this new journey begins. While my mind and my sight will be spared. I notice it slowly, take over parts of my body. But I’m still here, and I fight on with what motor neurons I have left! Sometimes it feels like the fight scene with the Knights in that old Monte Python movie. “It’s just a flesh wound!” haha… I freakin’ love that scene.

So why am I depressing everyone today? I swear I’m not bitching or feeling sorry for myself. I’m actually in a pretty great mood right now. Sunday night shows rock! hmmmm…. Oscars, Walking Dead or Homeland. All three? why not! I promise not to do this here often. But I need to do what I can to help my brothers and sisters who join me in this fight. There is a cure out there some where, I’m so sure of it. But the urgency and the attention to this cause is not where it needs to be. If the cure doesn’t come in my time, well I must do what I can to spread awareness for the families who will continue to suffer long after me.

I knew exactly nothing about Motor Neuron Disease, as it’s called throughout the rest of the world. I’m far from the only one that had no idea what it is, so I must do what I can to explain what the heck this is like and what it does to people. With so little attention paid to it in the general public, finding a cure is just gonna be that much harder to attain.

So while we watch these perfect movie stars walk the red carpet tonight, think about those you love around you. We all have our battles and we can choose to spread awareness to things that really matter in this world. And so I battle on… “it’s just a flesh wound!”

I’ve been throwing the term “warrior” out there a lot recently in describing myself and others battling in my world. For a while now I had been searching for an appropriate word that depicts a fighter. This is because that’s the mentality I must have to push myself forward each and every day. Almost like a mantra I repeat to myself each day. It seems so silly to me sometimes. But even when you know in your heart there’s no giving up, for me I have to acknowledge it out loud and hear myself say it. I’ve been advised by friends to come up with a #hashtag that would stand out and could describe me. The only thing that came to my mind (that wasn’t already taken out there in the interwebs) was #ALSWarriorRich. Yeah I know… slick and sexy, it is not!

So in this post today I would like to write about what a warrior means to me, because it became very clear and very real to me this week. You see this week I lost someone in my world. A fighter, a brave man that looked down the belly of a beast and battled heroically till the very end. A Warrior.

I’d like to introduce you to my friend Jack. Jack was a good friend. We met under difficult circumstances about 10 years ago. We were joined in a different type of battle back then. We built a friendship. We laughed, played guitar together, learned a lot and we were there for each other for a short period of time which felt like ages. After that we would share a front row seat next to each other from time to time and have a chance to check in. Jack was strong and brutally honest and emotional, just like me. He got even stronger in the end. We weren’t best friends by any means, or long time school friends. After 5 or so years we would rarely connect very much. We could see that both of our families were doing well. He posted pictures of his cute son and photos of the food he’d prepare like a professional chef. That’s what happens with friends sometimes… and it’s ok. Life happens and the world spins on. But I didn’t forget that bond we had built and neither did he.

You see over this past year I was struggling privately with my ALS diagnosis. I told no one for many many months. One day I saw a post from Jack and he was in a hospital bed getting tests done. I didn’t know what to think or how to react. At that point I didn’t know that Jack was undergoing cancer treatments. He was brave and so open as he shared his journey, his fight, with his followers out in the open… he battled. As it turned out Jack was dealt a very rare, aggressive cancer.

I finally got the strength to reach out to him by text and see how he was holding up and we once again laughed and we cried. I shared with him that I was also battling a rare and terminal disease. I told him that I don’t know how he did it, sharing so vulnerably to the world? I was terrified of that. He counseled me on the therapeutic and medicinal effects of opening yourself up. And not just the bad stuff. I’d see photos of his smiling face with his beautiful wife and handsome son. He was putting together a cookbook to leave behind with all of his amazing recipes. I marveled at his strength.

Well a few weeks later I decided to share my story with others in the rest of my world. The good, the bad and the ugly. After I wrote out a long post on social media telling the story of my battling an ALS diagnosis, Jack called to check in with me this time. He asked how it felt to let others in and open up about my struggle. He was right, the outpouring of love, compassion and support was overflowing. It was such a nice moment, we joked as only two friends can do. Two good people who have worked so hard to be better people, great dads with bright futures ahead, only now we were dealt really shitty hands in life that were completely out of our control. After sharing some tips and advice to stay strong, we wished each other Godspeed and promised to continue to check in every now and then.

That would be the last time I’d hear from Warrior Jack. Three or four weeks passed, and I didn’t see any social media posts. The other night I saw the the most beautiful sunset from my apartment window. I could feel something greater than myself, something so peaceful wash over me and bring a tear to my eye. I went over to visit Jack’s’ FB page and saw the announcement of his passing. His heroic fight was over. His beautiful family by his side. Jack’s pain and suffering was over. He rests peacefully now, a Warrior. A brother in arms.

The term Warrior now has the meaning I was looking for. This is how I must lead my life. Everyday. Every minute.

We had such an awesome time at The Capitol Theatre on Saturday night! I was so happy to see so many peeps still came out dispute the cold, rain and snow! It was coming down hard, so I don’t blame those who didn’t venture out. I’ll catch ya next time. Next time for me will be next Sunday night at the Cap for Blues Traveler.

I’d like to give a huge shout out to my dear friends, Matt & Jill who set this all up and flew in from Miami. It was really cool to be there with our daughters. It was their first time at the Cap. Lindsey loved checking out all the Jerry photos and memorabilia in Garcia’s.

The room, half full because of the weather was nice and cozy. The Cap staff is always so great and super accommodating to me in the ADA section. It really makes it a great place for me to get out and see live music with my big ole power-chair. Railroad Earth & Jeff Austin played a fantastic show!

Nights like this I really cherish as my struggles seem to slip away.

Even for just a little while…

The old crew back together @ Garcia’s at the Cap!L-R: Lauren McCabe, Matt Bohm, Rich Lieberman & Jill Muller-Bohm

After about a month of non-stop craziness it feels like this week we can finally relax a little bit. Without doubt this has been the busiest time since my diagnosis and it seemed to come with such a flurry. Finally gaining approval from big-insurance, I quickly made my first infusion appointment a week later. The initial treatment being 14 consecutive days of IV infusion of this newly approved drug. While at Stamford Hospital, I decided to get a permanent Port inserted in my upper chest to make these infusions easier in the long run. It was a good move, but it’s still a minor surgical procedure that wasn’t fun. Add in scheduled visits to various doctors, therapists (OT & PT) and a trip to the ALS Clinic in New Britain, CT and I’ve been running on fumes.

I’m also looking ahead and being proactive in receiving some of the medical equipment that I’ll eventually need for my home sooner or later. Three of these devices were delivered last week and well, I’ll just say it… it’s freakin depressing that I will eventually need the use of these aids and devices. Already having lost the use of my legs has helped get me tougher emotionally. Its also helped that I do have the cool Cadillac of all power-wheelchairs (of course w/ my Dead Head sticker on the back.)

But in the end… there is no real stopping this train as this disease takes away so much in its path, the biggest being one’s independence. As I do everything I can to slow down the train and fight with all my might, this is all a part of the journey. And I’m really trying everything… gov. trials, multiple modalities of therapies, trips to my Connecticut Medical Marijuana Dispensary. I even just made an appointment today to visit Mass General in Boston to see one of very top neuromuscular doctors in the world. #NeverGivingUp

Man… just typing all this out made me exhausted!

So now that I’ve got that off my chest, this week marks another full year with lots accomplished. Thanks to Facebook “memories” I was alerted that two years ago I brought the kids down to Florida to visit family and friends. In these photos I was able to stand on my own two feet, but just outside the frame of those images were my arm-crutches. We had a blast. My daughter Lindsey is in Miami now with her girlfriends, again staying with our life long friends Matt and Jill. I’m so grateful.

Ryan & Lindsey With Dad – Miami 2016

02.10.2016 – Jill, Matt & Rich – Miami Beach

Last year at this very time I was just moving into my awesome new apartment. I cant believe I’ve been here a year! I have full access to everything in a big space, right in downtown Stamford. I can go out and ride around town, hit all the restaurants, stores and parks. I couldn’t do that a year ago. So this has been a huge blessing.

02.08.2017 – Stamford, CT

Most importantly, just about a year or so ago Lauren came back into my life. She’s given up so much to become my full time caregiver. I would be lost without her tireless strength, support and compassion. Sometime soon I’ll probably write more about how this remarkable situation came about. But it’s meant our little family unit is close together once again, and I don’t have to fight this battle everyday all alone. It’s not easy taking care of a pain in the ass like me… she’s an angel!